Quali-NET: A prospective study on patient-reported quality of life in neuroendocrine neoplasms

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Introduction: Neuroendocrine neoplasms of the lung (LNEN) or gastro-enteropancreatic tract (GEPNEN) are typically slow-growing, leading to longer overall survival, and resembling chronic illnesses. Therefore, focus on quality of life (QoL) is crucial. While brief studies have been done, comprehensive, long-term studies are needed.

Aim(s): Assess QoL through a prospective 5-year study using questionnaires every six months.

Materials and methods: All NEN patients monitored within NETwerk (ENETS CoE in Antwerp) are asked to participate. QoL is measured for 5 years using patient-reported outcome measures (PROMs) via a primary satisfaction survey and 6-monthly questionnaires (EORTC QLQ-C30 and EORTC QLQ-GI.NET21, recoded to an 100-point-scale). Data is collected in REDCap and linked to clinicopathological data. Data analysis is performed using R.

Conference:

Presenting Author: Islam O

Authors: Islam O, Depauw L, van der Massen I, Simoens M, Galdermans D,

Keywords: GEP-NEN, LNEN, Quality of life, Longitudinal data,